I am planning to do an update blog entry as soon as I get a chance. Got lots to update about the cancer stuff. Until then here's a picture my niece Caressa colored for me...
Thursday, December 22, 2011
I am planning to do an update blog entry as soon as I get a chance. Got lots to update about the cancer stuff. Until then here's a picture my niece Caressa colored for me...
Saturday, November 12, 2011
Was up most of Monday night because of the cramping. Better on Tuesday, Wednesday, and Thursday but had bad cramping again on Friday. I didn't take the Miralax on Thursday because I needed to go to Sam's Club. So I guess that proves that the Miralax is helping. Still tired.
Labs showed my INR dropped again... so now I'm taking 7.5 mg of Coumadin 4 days a week, and 5 mg for 3 days a week.
Talked with the doctor about the bone marrow transplant. We are going to finish this regimen of chemo to see if it works, if doesn't, then we'll go ahead with the bone marrow transplant. She just wants me to keep going on the financial end so if and when it's time, we're prepared. Even if this chemo puts me into remission for a while, with this type of cancer, eventually I will need the bone marrow transplant. I opened a separate checking account to deposit the funds into, I've got the PayPal account set up to receive money, and you don't have to have a PayPal account to donate. Now working on setting up the button and link.
Thursday, November 10, 2011
November 10th is a big day for Marines. It's the 236th birthday of the United States Marine Corps. My dad was a Marine in Vietnam. I believe this day is more important to him than his own birthday.
Saturday, November 5, 2011
Last Monday I quit taking that Bentyl (Dicyclomine) for the cramping. It was causing a severe lack of concentration and I just could not focus at all, I was having a difficult time even thinking straight. I spent most of my time laying in bed sleeping or staring at the tv or out the window... sometimes at my computer screen watching my bubbles screensaver. I just wasn't accomplishing anything. It also caused me to have real blurry and fuzzy vision, so much so I couldn't drive. And weirdly enough, I started breaking out, which, in addition to all my other side effects, also cleared up a few days after stopping the medication.
I'm trying something a little different... I'm taking half a Miralax everyday to see if that will help. So far I'm just having minor cramping. Not sure if it's the Miralax regimen or just that it's been a couple of weeks since my chemo and maybe the medication has gone out of my system thus causing the cramping to diminish. My next chemo is Monday so I guess we'll be finding out. I'm going to talk to the doctor to see if there is some other medication I can try... not sure if taking Miralax everday is healthy.
Thursday, October 27, 2011
Family Research Council: Washington Update
Yesterday, he expanded on this phenomenon in an article published by the New England Journal of Medicine. "Early approaches to restricting abortion access were directed largely at [women]--the demand side of the market and perhaps frustrated by many women's determination to overcome demand-side hurdles, abortion opponents have turned to supply-side restrictions, focusing on providers of abortion services. This strategy is likely to be more effective." Believe it or not, abortion is one of the least regulated surgeries in the United States. In Pennsylvania, for instance, one district attorney said the state's clinics have fewer regulations than beauty salons or public schools. So one approach pro-lifers have taken, most recently in Virginia and Kansas, is passing laws that force abortion clinics to meet the same standards as ambulatory hospitals. That means more licensed staff, better sanitation, bigger rooms, and cutting-edge equipment. To most of us, that only sounds logical. But to abortion clinics, the bulk of which cut corners to make a profit, it represents a huge hurdle in doing business. For them, the emphasis has always been on revenue, not patient safety. When they're asked to comply with strict new health standards, most would rather shut down than protect women.
Take the state of Texas, for instance. Seven years ago, legislators passed a law that required all abortions at or after 16 weeks be performed in a hospital or ambulatory surgical center. Dr. Joyce points out that the policy had a shocking effect on the abortion rate. In one year, "the number of abortions performed in Texas at or after 16 weeks of gestation dropped by 88%, from 3,642 in 2003 to 446 in 2004." In Arizona, he explains, bearing down on the clinics had a similar effect. Leaders there passed a rule that only doctors could perform abortions. "As a result," Dr. Joyce writes, "Planned Parenthood of Arizona stopped performing abortion services in three clinics, since only nurse practitioners had been available&" Ironically, the same groups spending millions of dollars to protect abortion are the ones fighting these laws. That, more than anything, should expose the pro-abortion movement for what it is: cold, calculating opportunists who see women as profit, not patients.
Wednesday, October 26, 2011
I stopped taking the Allopurinol last Friday and the cramping has just gotten worse and worse since I stopped. I'm having severe cramping now. Extremely tired... like I just can't go on. Spending most my time in bed sleeping. Still having a problem with the lack of concentration.
I called the doctor today and she prescribed a new med, Bentyl (Dicyclomine), which is like Tylenol for your colon. It helps to reduce stomach and intestinal cramping, it slows the natural movements of the gut and relaxing the muscles in the stomach and intestines.
This medication can cause dizziness, drowsiness, lightheadedness, weakness, and blurred vision. Also can cause dry eyes, dry mouth, nausea, constipation and abdominal bloating. Oh how fun!! We'll see how it goes.
Sunday, October 23, 2011
The hawk, captured in a San Francisco park by rescuers Saturday, was doing "very well" while being cared for at the Wildlife Center of Silicon Valley in San Jose, said Rebecca Dmytryk, executive director of the Monterey-based group WildRescue.
"The nail dislodged and dropped out during transport with no sign of additional trauma and no bleeding," Dmytryk said.
Saturday, October 22, 2011
CJ Shaw is my nephew, he played a great game last night and was interviewed after the game.
BY NATE TAYLOR - email@example.com
WAKE FOREST -- One by one, Wake Forest-Rolesville players praised C.J. Shaw before celebrating their 55-23 victory over Millbrook.
Though many players performed well Friday night, the fourth-ranked Cougars (9-1, 6-0 Cap Eight 4-A) knew this game belonged to Shaw.
He played a central role in keeping WF-R's chances of winning a conference title alive. Shaw, a backup defensive lineman who had never played a snap on offense, was forced to start at center with Jacob Baucom sidelined by illness.
"I knew I had to push hard," said Shaw, who learned WF-R's Wing-T offense this week. "I was trying to get everything done right."
The snap-exchange from Shaw to quarterback Cameron Fray never produced a fumble. And once Shaw started to get comfortable, WF-R's offense started gaining yards by chunks.
In the second quarter, the Cougars increased their lead on Millbrook (5-5, 2-4) with runs to the outside. On consecutive drives, running backs Petey Williams and Casty St. Louis each broke through Millbrook's defensive line for long runs. Williams ran for a 52-yard touchdown and St. Louis raced for a 67-yard score.
"Surprisingly, I enjoyed it," Shaw said. "If we open up a hole up, (Williams and St. Louis) are gone. It's awesome when you look up and they're 20 yards down the field."
Williams was impressed with Shaw's ability.
"To me he looked like a natural at it," he said.
Coach Reggie Lucas knows the offensive line is the most important aspect to the Cougars' success on offense. Though WF-R entered Friday's game averaging 35 points, the Cougars haven't thrown the ball more than 10 times in any single game. Lucas relies on this lineman to move defenders out of the way to create paths for the running backs.
Lucas said that's why Shaw was so vital to the Cougars game plan.
"He stepped in, and I thought he did a phenomenal job," Lucas said. "For the coaching staff to make that adjustment was key for us."
When Shaw found out Monday that he was going to have to learn a new position, he sought guidance from many of the same teammates who were proud of him after the game. After all, Shaw helped the Cougars score seven rushing touchdowns.
"At first, I didn't want to go to offense, but this is really fun," Shaw said. "I loved it."
Now, the Cougars will get their chance to win their sixth consecutive conference title when they play Leesville Road (9-0, 6-0) on the road next week.
Even if Shaw, a junior, doesn't play at center against Leesville Road, this is still his first season playing for the Cougars. So, how would it feel to know he helped the Cougars win it?
"It would be like ... the most awesome thing," Shaw said.
Friday, October 21, 2011
I had to go and do labs... 45 minute drive to take some blood and check my INR level. That's to make sure my blood is thin enough, I guess. Don't want to clot.
My level was low... can't remember the exact number, but was below a 2. They want it around 2.5. So they upped my Coumadin dosage a little bit, but only for two days a week. So now it's 5 mg per day, except two days a week I have to take 7.5 mg. They also want me to come back for labs in 10-14 days.
14 days would be the Friday before my next chemo, so I hoped we could just wait the 2 extra days and do it on that Monday. Nooooo, I have to make an extra trip. So my appointment is Wednesday, Nov. 2nd at 10:00 am. :(
So far this week I've only noticed a few minor reactions... not sure what is the chemo and what may be the Allopurinol. Or maybe it was just the mass death of cancer cells. Anyways, tonight is my last day for taking the Allopurinol... so that will hopefully shed some light in the next few days.
I have had some cramping, very tired (no energy what-so-ever), some dizziness, awful lack of concentration. Have slept a great deal. No nausea, but a decrease in appetite.
We'll see how it goes next week.
Monday, October 17, 2011
So far no bad side effects, no nausea. Just real tired. Was there quite a bit longer than expected today. Arrived at 12:40 pm and left at 3:40 pm. Shouldn't take that long in the future. Labs, consult with doctor, chemo... should only be about an hour... hour and a half at most.
I'm the first, and only patient at this time, getting this particular drug at Rex Cancer Center. How cool is that... I'm a PIONEER!
The drug is Brentuximab Vedotin, also known as Adcetris.
Sunday, October 16, 2011
Had my port surgery Friday morning. It was successful... I now have an arm port.
As soon as I got in there I told him I hadn't gotten any sleep and if he gave me anything I might go completely out. This would probably set off my sleep apnea and I would probably start moving around. "Just want to let you know, you have been warned.", I said.
He said we could just do a local instead, if I wanted... instead of a light anesthesia (or twilight). I agreed saying we could always go deeper if we needed.
He gave me the local... and as usual when I get numbed... I started giggling. I was trying so hard not to shake. I had everyone laughing. They're not used to this kind of reaction. It made for a very light and fun surgery for all.
He measured out the line by inserting a wire first, he did mention something about my vein being *something* (I can't remember the word he used, but it wasn't good). Said it was probably because it had been messed with before. *This is the same place I had a port back in 2005.* He threaded the line in, but for some unknown reason, it was a little short. He thinks he knows why, and he would have to start from scratch if he took it out, he tested it and it worked fine. Said it didn't quite make the last bend, but that would give it less reason to kink.
I asked him if he felt confident that it would not be a problem, because if so that's great and I would trust him on it. But if for any reason he felt that a problem of any sort could arise from this... I would be that person, that WOULD be me. That's just how my life goes. He said he felt real good about it, he tested it, and it works just fine. We shall see!! *crosses fingers*
He did say there was a small blood clot at the site where my PICC line had been. He did not seem concerned at all. But I was a little... I had my PICC line removed on July 12th. So just how big had this clot been to still be there now. Figured I needed to call my oncologist as soon as I got home. Since I didn't have any anesthesia they could let me go fairly quickly... and I could walk out instead of being wheeled.
When I got home I called the nurse line and left a message: "Had my surgery, it went fairly well, now have an arm port. While looking at my veins with his machine, he noticed a blood clot at the site where my PICC line had been. He said it was a small clot and he did not seem concerned, but I wanted to let Dr. Olajide know just in case she wanted to increase my Coumadin a little for awhile. If so, just give me a call. Thanks."
It wasn't long before I received a call back... Great catch, that was a very good call and the doctor did indeed want to increase the Coumadin from 1 mg to 5 mg daily. She also wanted me in for labs next Friday to check my INR levels. Thank you very much for calling that in. We should put you to work. *See, I do know what I'm doing*
I heard three different times by three different people today that they should put me to work. Two at the hospital this morning and once by the nurse who called me back. *pats self on back*
Not much pain, just a bruised kind of achy pain... Tylenol takes care of it. Very tired. I napped for a few hours after.
Got up around 11 am Saturday, then napped later in the afternoon for about 1-1/2 hours before being rudely awakened by CJ. I was so out of it. He was looking for my car keys... which dad had because they had gone up to my house, mowed the lawn and got my washer & dryer.
Got up and went out for dinner (mom made mexican), visited with CJ & Bethany. Then Seri came over, dad took her shopping at Kohl's.
Friday, October 14, 2011
On Monday I started running a temperature, it started at 99.4°... then went to 100.1°, then 100.6°. The mass under my armpit is huge and it grew so fast. Very short of breath today. Also swollen, took some water pills.
Tuesday my temp went from 100.3° to 100.7° to 101.2°. Considered calling the on-call doc but figured they'd just tell me to come down to the emergency room and I really didn't feel like getting jacked around there all night. Decided I would just wait to see if it got worse.
It was also my last radiation session... to which I disagreed with the doctor on. I feel we should continue with a few more sessions. The lump is considerably smaller, but you can still feel it really well. He keeps insisting that it's scar tissue from the biopsy incision. Excuse me, but scar tissue doesn't shrink with radiation, which this was doing. Also, he didn't examine or feel it before I had the surgery to know what was there before hand... what we are feeling IS the mass. It's the same mass that has been there, just a smaller version now. Another thing... I have several scars from other surgeries I have had recently and none of them feel like this. But I let it go... I told him I disagreed and let it go, I was done fighting with him about it. Figured I would wait to see if the chemo had any effect on it, if not or if it does at first and then returns, then I will just have to have more radiation... with someone else. You know, I went through this once already back in 2008. I had radiation at the beginning of the year, they evidently did not give me enough and it came back. So I had to go back and get more radiation at the end of the year. This time I got enough and it has not come back in that spot since. One spot of my arm that has been cancer free since the end of 2008! So I kind of know what I'm talking about. I wish that other doctor was still practicing. He was older and got hit by a bus while I was at the end of my treatments. He pulled through but ended up retiring. He got hit pretty bad and it was going to be a long recovery, I guess. I had to meet with someone else my last session.
Wednesday my temp went down... it started at 98.8°, went to 99°, then 99.3° and down to 98.3°. Went to my Chemo Education class, pretty much knew everything she had to tell me. I had already researched the drug and the company. I went to the drug company site, Seattle Genetics (SeaGen) @ http://www.seagen.com/. I went to the FDA site, http://www.fda.gov/AboutFDA/CentersOffices/CDER/ucm268969.htm. I also reviewed a few news articles where the doctors had been interviewed. Oh, and I also read the study information.
Saw the Vascular Radiologist for the consult... he said I would leave there with one port or another. He's going to have both kinds on hand so if he gets in there but ends up not being able to do the arm port for whatever reason... he'll switch right over and do the chest port. I was very grateful, that way I won't have to reschedule for the second attempt and get behind schedule. I have to have a port or PICC line to take the chemo drug. Praying it all goes well and is able to get one or the other.
Thursday my temp crept up to 98.8° then up to 100°.
My chemo was supposed to start on Oct. 20th, but we've bumped it up to Monday, Oct. 17th. Got to get some sleep, have to be up early for the port surgery.
Monday, October 10, 2011
This is a continuation of the previous update post and is a summary of what occurred between mid-July thru to the present.
In my previous update, I forgot to include that in June after my 5th or 6th round of chemo my toenail came off. The one next to my big toe on my right foot. I was afraid I was dying or something… at least, that’s what I went out asking mom after it came off.
Here’s a photo of the cake my niece, Cianna, made me. It made me laugh because of either the misinformation or just the innocence of a child’s mind, but it read “No More Cancer” as if I was cancer free. I thought, “Well, we could always hope.”
Roughly two weeks after my oncologist declared that I may be in remission I had a large mass reappear in the back of my right arm. Aug. 4th I had a Punch Biopsy done. It came back negative for the lymphoma, but my surgeon and I both knew that was incorrect and figured we weren’t able to get deep enough with a Punch Biopsy, so we scheduled a Surgical Biopsy for Aug. 15th. He had to go in deeper than anticipated so the incision is pretty long and deep. Got six stitches... kind of looks like a Frankenstein scar, lol. Two days later he called with the results. Positive for the same lymphoma I've been fighting.
See the white ring or lighter ring around the incision area, that's because of the pressure caused by the mass pushing up underneath my skin. It was so tight I was afraid the stitches were going to rip through.
Saw my oncologist on Aug. 24th, she referred me to a radiologist to get started on radiation treatments. She also discussed doing chemo again… she was going to a conference and was going to present my case. Saw the radiologist for a consult on Sept. 2nd. Also had a PFT (Breath Test) to check my lungs… still having extreme shortness of breath. Starting to fear there was permanent damage to my lungs from the chemo or something. Tests showed I have good lung capacity. The nurse giving me the test was surprised, she could hear my shortness of breath just walking down the hall, she also heard the wheezing. When she listened with the stethoscope she realized the wheezing was coming from my throat/esophagus area.
On Sept. 7th I went to Rex Radiology for my Radiation Simulation which is setting up for my radiation treatments. On Sept. 13th I saw my oncologist again, she was told to hold off on the chemo for if and when I really needed it. There is a new drug out now that targets my type of lymphoma, but it just came out and is very expensive. Hopefully if I do eventually need to do chemo again, this is what they want to use and at that time it will come down in cost… but for now just stick to the localized radiation. She also was setting me up to see an ENT about the lump I feel in my throat and the trouble with my breathing. ENT appt not until Nov. 15th. I started radiation on Sept. 14th and I’m scheduled for 17 treatments. I go every weekday at 1:15 pm at the Rex/UNC Radiation Oncology, Rex Cancer Center of Wakefield.
Into my second week of radiation, I noticed the mass under my armpit seemed to be getting bigger, when I saw the radiation doctor that Wednesday I asked for his opinion to make sure I wasn’t feeling more than what was really there. He said he felt something. So I called and scheduled an appointment with Erin on Sept. 27th.
On Saturday, Sept. 24th I had an appointment for my car… the brakes hadn’t been feeling right and figured I should get it in for new brake pads. Joe picked up my car on the way to work (it’s his garage), worked on it during the day, then brought it back to the house. He lives near us and knows what I’ve been going through, I’m friends with his wife also. That was incredibly nice of him to go out of his way like that… and, he ended up needing to replace the rotors too. Then he and his wife gave me a truly amazing gift, he did not charge me a dime… it was a gift from them as a way to help me through my financial struggles. At first I said, “No, you need to feed your family.” But then he went into this spiel about feeling led to do this, situations he’s been in, vague situations his wife had come up against, and that they really wanted to do this. It was so sweet and he sounded a little uncomfortable and he had me tearing up… so I told him, which I have been told, that I needed to be more gracious in accepting gifts. (I’m uncomfortable accepting gifts or help, almost like I don’t deserve it.) So I would accept their gift graciously. I am truly blessed to have people like this in my life. I am blessed in many ways.
On Sept. 27th I saw Erin, she felt the mass. I had an appointment for a PET scan already scheduled for my 3-month check-up, so we just bumped it up from Oct. 5th to Sept. 29th. Erin called the next day, the mass under my armpit lit up… so did the bone marrow in my pelvic area. The cancer has moved into my bone marrow. Fortunately it has just started, it was peppered and not large spots. So after radiation they want to start chemo with that new drug. It was tentatively set up for Oct. 10th, but they wanted to wait 2 weeks after my radiation ended and they needed to get me approved for the drug financially through SeaGen (Seattle Genetics), which I was last Friday, Oct. 7th. So now I’m tentatively set up to start chemo on Oct. 20th.
On Oct. 1st I took my nephew, CJ, driving to teach him to drive a stick shift. He did really well.
On Oct. 4th, mom had to put her cat Fluffy to sleep. She had a brain tumor. Her leg was spasming, found out her pupils were enlarged and she was howling all the time because she was almost totally blind, she started throwing up the night before and did not eat that morning.
On Oct. 5th I saw the radiation doctor again and we decided to extend the radiation treatments for (at least) 3 more sessions. We’ll reassess the situation on Tuesday.
Now that I’m tentatively scheduled to start chemo on Oct. 20th… AND since I found out that my treatments will be every three weeks… AND I’m scheduled for 16 sessions… which means approximately once a month for a year and four months… I have scheduled an appointment with a Vascular Radiologist about getting a port in my arm like I had back in 2005. There is no way in hell I’m going through 16 months of this with a PICC line as first discussed (before I knew the time table). I’m trying for an arm port first, if not, then inquiring about another chest port, then the PICC line would be a last resort… if ALL else fails.
My appointment with the Vascular Radiologist was supposed to be Monday, Oct 10th, but someone screwed up and wrote it on the wrong day, it was put in on Tuesday… but the doctor doesn’t do this on Tuesdays and Monday was all booked up now… so I had to be moved to Wednesday, Oct. 12th. Which I am also scheduled for my Chemo Education class. We also made an appointment for the surgery on Friday, Oct. 14th. just in case we get a thumbs up for the port. We can always cancel if needed.
My oncologist said I should have a bone marrow transplant, but without insurance no one will even discuss it until we have the money. I was told it would run a couple hundred thousand dollars. The procedure itself is about $35,000., then you have doctor fees, hospital fees, medications, follow-up care, etc. So I need to research foundations and organizations to see if I can find any help there, I will also need to raise donations to help fund it. I am in the process of setting something up so that anyone can donate any amount they like through paypal, with a credit card, or bank account, and possibly checks. Even if all you can donate is $5, if I get enough people to donate $5 or $10 dollars... I might just be able to raise enough. I will have the donation button on my blog and will post it on my Facebook page.
My cousin Kelly is having a double mastectomy today. Praying that it goes well.
Sunday, October 9, 2011
Hello everyone… I know I’ve been out of touch for awhile, quite a bit happened and between medical appointments, work, and being so darn tired I wasn’t able to keep up with emails, Facebook and blogging. So, to start catching you up, here is a summary of what occurred between mid-April thru mid-July.
After my 2nd round of chemo I ended up in Urgent Care with a bronchial infection and missed a whole week of work. The following weekend I was in Urgent Care again for middle ear inflammation. Even though I was suffering from a bronchial infection and middle ear inflammation, the Urgent Care doctor did not give me antibiotics. I was sick, in pain, and was having real trouble hearing. On April 19th I verbally browbeat the after hours answering service for the cancer center into having the on-call doctor call me, even though it was not technically an emergency. He called me in a Z-pak, thank God. Two days later I was in to see my family doctor for fluid in my ears and blood in my urine. I was also having bad pains in my right shoulder and neck area, especially when I coughed.
On April 25th mom had to put her boxer, Sassy, down because of cancer.
On April 27th my Missy Bug died.
Somehow, for some reason, she got over the fence and out front into the road. Mom found her and buried her before I got home, she didn’t want me to see her like that. Missy was my baby girl, it just broke my heart to lose her. I still choke up and cry when I think about her. One day at the end of August, Simon brought a young bunny in through the cat door, I rescued it and tried to warm it up to release in the morning but it ended up dying. I walked down to discard it into the woods at the back of the property, on my way back I spotted the marker mom put at Missy’s grave. I hadn’t been to see it yet, it was still too hard, I cried the whole way back to the house.
On April 29th I went down for my third round of chemo, mom had something going on so my sister, Laura, took me. When they were doing the pre-chemo blood work, I complained about the pain and having a little trouble swallowing. The nurse went and got someone to come look at me… she came, took a look, asked me some questions and said, “We think you have a blood clot.” The sent me directly over to have an ultrasound done. Yep, I had a clot! Poor Laura… this wasn’t what she expected. I was admitted into the hospital immediately with a very large blood clot in my juggler. The clot was branching up towards my head, down my arm, and down towards my chest where the Port was. I was scheduled for surgery on May 2nd to replace my Port. I was in so much pain I was crying… I was on a Heparin drip to thin my blood (which also caused me to swell even more), but the pain was terrible. It wasn’t until late that night when a nurse finally called the doctor and said they needed to be giving me something for the pain. I was put on morphine, then Percocet was added, and eventually a muscle relaxant (can’t remember the name). That went on between Friday night, Saturday, and Sunday. Monday morning I had the surgery to replace my port, but when he got in there, there was so much scar tissue… he said it appeared that my body was rejecting the port. So he removed the port from my chest and put a PICC line in my left arm. When he removed the port a huge part of the clot came out with it, which caused most of the pain to disappear. I had my 3rd round of chemo that evening. I ended up staying two more days, I was released from the hospital on May 4th around 6 PM.
My oncologist wanted me off work for two weeks, but I went back a few days earlier on a 6 hour schedule. I was on major blood thinners, one is a shot mom had to give me in the stomach every night. You should’ve seen all the bruises on my stomach. I tired very easily, which is why I wasn’t online for quite awhile... just gettin' through the day was hard enough. The biggest blood clot came out when they removed my port, but I still had three smaller ones that will take awhile to dissolve. They also switched the shots I was taking… from Arixtra to Fragmin. I developed a severe reaction from it, I had yeast all through my system, it was coming out all over. I had a vaginal yeast infection, a yeast infection on my side and under my breast, on my legs between my ankles and my knees, and in my esophagus. It was awful.
(mom felt so bad)
May 20th was my 4th round of chemo. Six days later I was in the Emergency Room for shortness of breath. It was after hours and the PA wanted to be sure a blood clot hadn’t traveled to my lungs. With each round of chemo I was getting more and more short of breath and they weren’t sure if I would notice the difference. It wasn’t a blood clot in my lungs.
Because of the PICC line, they stepped up my chemo schedule from every three weeks to every two weeks.
June 3rd had my 5th round of chemo. This FROG was given to me by another woman receiving chemo. Her name is Michelle Scott and she started collecting frogs, adding the handwritten ribbons and giving them to chemo patients.
On the 6th I was back in the ER, sat in the waiting room for 5 hours. Finally got out of there about 2:00 in the morning.
June 17th was my 6th and final round of chemo. That evening /early morning, I got so sick and started throwing up. I threw up so hard I pee’d on the bed, down myself, and on the floor… I saw blood in the trash can and thought I was throwing up blood, turned out to be my nose that was bleeding (remember, I’m on blood thinners)… I also broke blood vessels in my eye. So then I had to clean myself up, clean the floor, and change my bed. What a horrible night!
June 30th I had a Nuclear Stress Test on my heart to see if there was any damage done… still trying to find out why I was so short of breath, also had swelling and pressure in my chest area. Tests came back fine… my heart was good. I was put on Hydrochlorothiazide and Furosamide (water pill/lasik) for the swelling, also given Potassium pills.
July 1st I had a PET scan. July 8th I saw my oncologist for the results and follow-up. I was informed that I “appeared” to be in remission. The mass in my lymph node had decreased significantly, although still slightly swollen in size... but that is normal because the node had been stretched very big for a long period of time, sometimes it never goes back to normal size. The lumps in my arm had also disappeared. I was set up to have a PET scan in three months time (Oct), by then it would give us a better idea. That was also my last day at work, I was laid off.
July 12th I had my PICC line removed and had a Doppler (?) to check my blood clots. They were smaller but still there. Had to remain on the crapping blood thinners that make me swell horribly. July 26th I had a D’dimer (?) On July 28th I found out my unemployment was being held up because of a mistake/miscommunication with the staffing company I worked for. I talked with the company the next day and it was cleared up, but it took until September 7th for the unemployment agency to correct it and release my payments.
Tuesday, August 23, 2011
Did anyone else feel that one? When it rumbled through, mom and I were eating a late lunch and I was on the phone with my sister, Laura. I said something I won't repeat but was, "What the **** was that?" Our house was shaking and felt like the whole house was actually moving. It shook pretty good, scared the heck out of both of us.
Crazy thoughts were running through my mind... did a plane or vehicle hit the house, was a twister coming through, what was happening?? Mom says, "That felt like an earthquake!"
Laura said it was probably just the guys tearing up the road in front of her house, which is just a few houses down from us. I didn't think it was... not movement like this. But her house didn't shake, she hadn't witnessed what we did.
Then my sister called back and told us she heard there was a quake in VA.
That's pretty confusing and real scary when you have never been through an earthquake and live in area that is not known for them. You stand still because it happens so fast and you don't know what to do because you don't know what is causing it. You're just waiting for something to show itself so you know how to react.
Wow, what an experience... not something I'll likely forget.
Friday, August 19, 2011
Mom borrowed some family photos taken at our Frisbee Family Reunions. (Click on photos to view larger images.)
Sunday, June 12, 2011
Saturday, April 9, 2011
I went in yesterday thinking I wouldn't be allowed to have chemo because I had been so sick, but weirdly enough, my counts were excellent, liver and kidneys very good... I think it was my liver that she said was better this time than last. Go figure, I guess chemo does agree with me. *lol* I chalk it up to God and all the prayers being sent on my behalf.
So I had my second round yesterday. Mom was able to go in and sit with me this time since flu season is "technically" over. I am doing much better, still dealing with the coughing and chest congestion. For some reason, every morning around 4 am, I go into a coughing jag. I'm glad to be coughing that crap up out of my lungs, but it definitely puts a crimp in my sleeping time.
I'm in new territory now, last time I only had the one round of chemo, then I moved here to NC and my new doctor stopped it.
from all my Blog and Facebook friends and family
Back in the beginning of January, an old high school classmate sent me a message on Facebook. He had seen my post about the cancer recurrence, he told me about his wife's cancer and said he'd keep me in his prayers. He was writing me from his wife's hospital room where she was receiving radiation treatments for brain tumors they had recently found. I haven't seen or talked to him since high school, I had some classes with him but didn't really hang out with him; I find it amazing how something like this can cause others to reach out for whatever reasons and it really touched my heart. He's posted a few comments of support, well wishes and prayers. Since I've been so tired and then sick, I hadn't really been on Facebook, not that I was ever on very much before all this, but I was wondering about him and how his wife was doing. Tonight I happened to check out his page before I sent a message to see if any updates were posted and saw that his wife had passed. I would like to request prayers for him in this period of loss and grief. Since you all have been so amazing and supportive for me and it has meant so much... I am hoping that your swell of support and prayers would help him through this awful time. *Since he contacted me privately, I wish to respect his privacy and not identify him by name. Some of my high school Facebook friends may know him and this situation. I know he'll see this post and any support/prayer comments left in regard to him.*
I want to thank all my little online "angels". Hugs and kisses to all! Most of all I want to thank you, Lord, for being my true rock.
Wednesday, April 6, 2011
This is a Prayer Quilt, made and prayed over by some wonderful ladies from the Faith Baptist Church in Youngsville, NC. Thank you, ladies.
I know it's been a few weeks since I last blogged, but I've been really tired. It's hard doing chemo and work.
I had my first chemo session on Friday, March 18th. I was nauseous over the weekend. The prednisone makes me sick to my stomach, but I have to take 5 pills (at one time) every day for 5 days after my chemo. At first I didn't think to take the other pills they gave me... the ones to fight the nausea... but when I did, all was well.
I was notified that I was approved by Merck for the ACT program, which helps pay for meds if you qualify. They're going to cover my Neulasta shots I need after my chemo. It helps boost my immune system so I don't get sick or infections as easily. The shot runs about $7000. a pop. I have to get one every three weeks on the Monday after my chemo. I also qualified for my Aloxi med through the Eisai Patient Assistant Program. This will be a tremendous help also. My Limited Benefit Plan health insurance through the temp agency doesn't cover any of my chemotherapy. At this point, I've maxed out about all my coverage for everything else. REX Hospital qualified me for their Assistance Program, so that's another HUGE help. I still owe several thousand dollars for surgeons, anesthesiology, labs, and such; also, I'm still waiting for bills to come through for a lot of services that didn't initially have my insurance info.
I had to have blood work done on Monday, March 28th, to check my counts... they were so good they had to call and tell me how good they were... she said I should do chemo more often. *lol*
On Thursday, March 31st, my hair started loosening and coming out.
YouTube Video of hair coming out: http://www.youtube.com/watch?v=nQ7HcmvHubA
On Friday, April 1st, my sister came to cut my hair. A guy I work with said when his mother had chemo, she cut her hair short and it didn't all fall out. I don't know if her chemo was as harsh as mine, but it was worth a try.
Here's little bits of video of my sister, Laura, cutting my hair. (The video is not the greatest, I learned to not let my mom run the digital video recorder)
YouTube Video of my sister cutting my hair: http://www.youtube.com/watch?v=IYKXA1NvG_0
On Saturday morning I got sick... I got up, had a cup of coffee and a blueberry muffin Laura had brought me the night before. Within a half hour to 45 minutes, all hell broke loose. I don't ever remember being this sick. I was power vomiting and had severe diarhea, and I couldn't get either to stop. My temperature was 101.3 degrees. I couldn't keep meds down or liquids. I called my doctor and she told me to try to get the nausea medicine down, she said she would call in some antibiotics, but I wasn't sure if it was an infection, virus, or just a bad muffin... my first thought was food poisoning or bad blueberries in the muffin. After about two hours things really hadn't changed much except my temperature went up to 102 degrees. So I called her back and asked her to call in the antibiotics. She was thinking that maybe I should be admitted into the hospital, but I told her I wanted to wait until morning to see if there is any change. It took everything I had to keep those meds down so they could get into my system. Finally the nausea meds started kicking in and I was able to start keeping liquids down. I was much better by morning but still in pretty bad shape. I didn't go to work Monday or today.
On Sunday, I got in the shower and so much hair was falling out it clogged up the drain. So mom shaved my head.
I'm supposed to have another round of chemo this Friday, don't know if they will let me since I've been sick and can't shake this fever. We'll see.
Tuesday, March 8, 2011
Surgery didn't go as well as anticipated. Evidently, under sedation, I was thrashing and moving about too much and wouldn't keep my head and neck in position for him to insert the line... he had to put me completely out. Of course, I have no recollection of this, which is odd because last time I was aware and talking (although I did try to nap a few times and woke myself up snoring). This time, all I remember is being wheeled in, looking around, and thinking it looked like a big storage room... then people yelling at me to wake up. This caused the surgery to last longer, they had to put a tube down my throat, I was in recovery longer, and the anesthesia made me dizzy and nauseated.
I'm in a lot of pain and I can't drive on the pain meds, so I'm going to try some Nuprin or Tylenol to see if I can get away with that instead. So far this is the worst of what I've gone thru. This is worse than the bone marrow biopsy. It freakin' hurts! And it's sore, like majorly bruised sore. I feel like I was in a car wreck, or got shot, or something.
Monday, March 7, 2011
If you're not watching this show... you're missing a darn good one! It's a drama with humor, sarcasm, heart and she's says the stuff we all say in our heads but never out loud. I realize it's on late for a lot of folks, but it's worth watching. Also, they have been running it again on weekends. I've seen it on Saturday and Sunday nights.
Harry's Law - w/Kathy Bates
Monday @ 10 PM
Also at Hulu.com: http://www.hulu.com/harrys-law
Sunday, March 6, 2011
I saw the surgeon, Dr. Eddleman, on Thursday, he doesn't do arm ports. He said they are more prone to problems like blood clots. I explained the debacle with the last port they TRIED to place in my chest, he wasn't sure why they tried placing it so low. He showed me were he would place it. He told me if I felt more comfortable with an arm port, he would refer me to someone that does it and assured me he wouldn't be offended. After talking with him about it and with such the great surgery he did for my biopsy, I agreed to do it his way. Granted, I'm a little nervous about doing this after the last time, and I really don't need one more scar on my chest... but I have faith in him and I trust him.
Here is my latest schedule of appointments.
MON, Mar 7
TUE, Mar 8
Surgery to place Portacath
FRI, Mar 11
Results & Discussion – Set up treatment
THU, Mar 17
Tuesday, March 1, 2011
This should be a cause for concern for every American, this isn't a Left vs Right or Liberal vs Conservative... this is a dereliction of duty! You don't get to pick and choose which laws to defend. If a president fails to defend any law, then I'd say that's an impeachable offense!
From the Family Research Council
Tony Perkins' - WASHINGTON UPDATE
Holder Right There Obama, FRC's Got a Question...
The mainstream media may not give this "coincidence" a second thought, but to FRC, this lightning-fast citation of the letter into a major judicial document is highly suspicious. Our concern is that the Department of Justice has been collaborating with the litigants in the Proposition 8 case behind the scenes, so FRC sent a letter to the DOJ asking for record of all correspondence between DOJ and opponents of Prop 8 in the last month. If there is a quiet partnership, the alliance would be both unethical and highly damaging to America 's rule of law.
Regardless of your political leanings, it should be obvious that a Department of Justice that collaborates with opponents of federal law to strike it down is clearly an example of a political system run amok. DOJ's job is to defend laws that Congress enacts--not help to undermine them. To read FRC's letter to the Department of Justice, click here.
Thursday, February 24, 2011
I had my second PET scan on Monday... it went well. Then today I had my bone marrow biopsy. Yeah, I was unprepared for that!
All last evening and this morning I tried not to think about it... denial, great tool when used properly! I knew I'd start getting anxious and worked up... so I settled into denial for as long as possible. About 9:30 this morning I couldn't deny it anymore... I'd have to leave work in an hour... anxiety, nausea, sweaty palms, deep (DEEP )breathing to try to calm my nerves! Oh, and I suddenly became a nervous pee(er)... don't know what that was about. It progressed as the morning went on. I went at 6:30 before I left for work, then 8, I think I went again around 9 am, then 10, then again at 10:30 before I left the office, then at 11 when I arrived at the doctor's office. Good thing my appointment wasn't later in the day... I would have dehydrated!
Mom met me at the doctor's office, I went in to have bloodwork done, then waited nervously. I didn't wait long, they took us back to a room... my temperature was up a tad, my blood pressure... well, that surprised the heck out of me. I expected it to be high because it usually is when I go see the doctor (White-coat syndrome? Nope, traffic-in-city syndrome!), plus with being so anxious and worked up. It was 129... that's it... usually it goes up the 140's. But my heart rate was way up!
So then they get me up on the table (those short table things you sit on when you visit the doctor), on my stomach. They lowered the back of my pants down just past my butt cheeks... this is how casual they are toward this procedure... just a regular doctors office and no changing into a gown.
They prepped an area just above and to the left of my butt crack. She started giving me injections of the numbing stuff, about 4 injections (I think), deeper and deeper towards the bone. The last one felt like it hit a nerve... oh my gosh, how uncomfortable that was. Kind of took my breath away. I thought I was getting another injection, but then I felt it! It was the needle going down and it hit that nerve area... and stayed there! Oh my gosh, it was awful! I was clenched up and breathing hard, I think I was making some sort of groaning noise or something. Then, "Son-of-a-bitch!" exploded out. I didn't know whether to holler or throw up. After a bit, she says, "We're almost done, 2 seconds more"... I'm like ok, 2 secs and it's over, ok... WRONG!... done with the bone marrow part... now she was screwing that thing down to take a core sample of my bone. "SON-OF-A-BITCH!!" She's over top of me, pushing that thing down pretty hard. That intense pressure, the nerve pain, you will just never know... they can numb the tissue around the area, but they can't numb down into the bone. It wasn't a sharp pain like I expected... it was an ongoing, never letting up, heavy pressure, intense "hit-a-nerve" pain. It hurt like a mother-effer! *Excuse the language*
Then I had to sit there for 10-15 minutes with an ice bag against my butt. Mom said I did better than she thought I would, she figured she'd be hearing more cursing than two SOB's. *I was trying really hard not to* They showed us the bone marrow, it looks like thick blood with bits of bone floating around in it. They also showed us the bone sample. That was pretty cool.
They have this little "shop" with stuff for cancer patients there, I stopped and picked up a scarf and two turbins (I call 'em lil' beanie hats). Mom went home and I went back to work. Which I kind of regretted later after the numbing stuff started wearing off, but I needed the hours.
I meet with Dr. Olajide on March 11th to get the results for both tests and my treatment plan.
Sunday, February 20, 2011
No Sheeples Here: The President Who Stood By Our Side: My Tribute To Ronald Reagan
I just came across this through Supi @ Just an Artist.
Original post from No Sheeples Here.
Click through to see video tribute.
Posted by Michelle at 2/20/2011 01:10:00 AM
Saturday, February 19, 2011
I've put this in God's hands. When I agreed to see the radiation doctor, I said, "Lord, I did my part, I said what I felt I was led to say. Now it's up to you to intervene with this doctor."
Time will tell, but I feel that God was speaking to me in that moment, I was obedient even though I figured my doctor would think I was crazy, and now I'm being told from this new doctor that radiation is not right for my situation and that I need to do a harsher chemo than what I thought I would need. She's concerned that it has already started to spread further... so much so that not only am I doing a bone marrow biopsy, but she had them call my insurance company to explain the need for another PET scan... and got it approved.
So now I have a new schedule:
MON, Feb 21
WED, Feb 23
Bone Marrow Biopsy
THU, Mar 3
FRI, Mar 11
Results & Discussion – Set up treatment.
Friday, February 18, 2011
Okay, I left off at waiting for the results of my biopsy...
I saw my oncologist for results, discussion and treatment plan. It is the same lymphoma that I've had... which is good news because we aren't dealing with a new "second" form of cancer. My doctor thinks I should do localized radiation.
When I first saw him he said we would probably need to do chemotherapy... not the harsh CHOP version like I had before, but a milder form and that I "may not even lose my hair". I told him I thought I should do chemotherapy. He gave me this analogy of "not destroying the whole neighborhood because of one bad neighbor". But my whole neighborhood is messed up... yes, we need to destroy the whole neighborhood... because it's not only under my armpit, but also still on my arm. I have several bumps/lesions on my arm. Also, if it has spread anywhere else but has not yet presented itself large enough for the scan to pick up, then chemo will treat those areas as well. Not that I want to do chemo.. it just sounds like the more logical thing to do in this situation. Plus, I felt it in my gut, so to speak. I felt like God was screaming in my head to speak up... we need to do chemo! He disagreed and wanted me to see the radiation doctor. The doctor would take a look and decide if it was viable for me to do radiation. I guess from the size, position, and whatnot... the doctor may decide that radiation may not be the best course of action. So I agreed to see him.
On January 18th I saw Dr. Anderson. I was told to come in 1/2 hour early... what for, I do not know, since I sat in the waiting room the entire time. Then I sat in an office for 20 minutes... like I have nothing better to do. I understand when you wait in the afternoon, sometimes they get backed up. This was first thing in the morning... first appointment. I felt like giving him an invoice for the time I missed from work!
Anyways, he checked me out, I listened to what he had to say, I told him what I thought, he understood why I felt the way I did and couldn't disagree with my reasoning. He called Dr. Z and, this is where it starts getting bizarre, Dr. Z was going to call a specialist with UNC to discuss my case and the possibility of Chemotherapy Replacement. "This doctor will explain it all but you probably won't want to go this route."
Anyways, I was curious to find out about this "Chemotherapy Replacement". A week went by and I didn't hear anything.
**Began wondering whether Dr. Z was having a tantrum because I questioned him or because I voiced my opinion.**
I called and left a message, nothing. So I called Dr. Anderson, 'cause he told me to if I didn't hear something. They hadn't heard anything either. The nurse called over and then let me know that they were finishing up processing the paperwork for my Bomary transplant and I should hear about an appointment by the following Monday. So I'm getting set up for this appointment and get a call that my insurance won't cover a Bomary transplant and I could appeal the decision but I need to get it started right away. So I say, "What the heck is a Bomary transplant?" She says, slowly and distinctly, "Bone Marrow Transplant". Dead silence on my end... Bone marrow transplant? Yes, the particular chemotherapy I would be doing would warrant me needing a bone marrow transplant. More silence... then I said, "I don't understand... a bone marrow transplant? How did we get from a simple radiation that 'should melt it like butter' to bone marrow transplant?" Which confused her. So I explained what had transpired... initial visit, light chemotherapy... after testing visit, radiation... I disagreed but saw radiation doctor, I voiced my opinion, he called Dr. Z and now we're at bone marrow transplant. She agreed that it didn't make sense. I told her to make an appointment for me to see Dr. Z so we could discuss what was transpiring. She said that he was going to be out of the office for awhile so let me set you up with someone else in the practice. At this point, I'm thinking he intentionally went way over to the other end of the spectrum to force me to do what he wants... radiation. **So now I'm thinking, "Is he really not available or has he decided not to see me anymore because I questioned him? I've been seeing him since 2005... how immature and childish"**
So she made me an appointment to see Dr. Olajide, but she wasn't available until February 15th. I really didn't want to wait another two weeks but what was I to do. By the time I see this doctor, it'll be almost 2 months since my PET scan.
I had my appointment on Tuesday. She looked over my file and checked me out thoroughly, she thinks the mass under my armpit has grown closer to my breast area. I also have a cyst-like mass on the back of my right arm. She said that I need to do chemotherapy, CHOP, like I did before... the harsh stuff where I lost all my hair, made me real tired and made my bones ache. I also need to do a bone marrow biopsy! My lymphoma was indolent (slow-moving), but is moving faster now that it's in my lymph system. A bone marrow biopsy will give her more information and she'll better gauge the extent and duration of chemo that I will need.
Wednesday, February 23rd - Bone Marrow Biopsy
Wednesday, March 2nd - Results/Discussion/Treatment Plan
I also stopped in at the Financial Aid office while I was down there. Hopefully I qualify for some assistance. I owe around $15,000.00 already. And with the real estate market the way it is, I'll be lucky if I break even on my house, that is, IF I ever find a buyer. The realtor wanted to list it at a price that would have had me coming to the table with $2000.00... I don't have $2000. In better days I would have walked away with about $10,000., now I'm hoping and praying for $5000. Most likely I won't see anything. I was depending on that money to pay some of these medical bills. Ain't life grand!
I keep praying for God to send me a buyer with a reasonable offer.
~~ By the way, I was told on Tuesday that Dr. Z took a medical leave of absence. ~~
Monday, January 31, 2011
By MELISSA NELSON, Associated Press
PENSACOLA, Fla. – A federal judge declared the Obama administration's health care overhaul unconstitutional Monday, siding with 26 states that argued people cannot be required to buy health insurance.
Senior U.S. District Judge Roger Vinson agreed with the states that the new law violates people's rights by forcing them to buy health insurance by 2014 or face penalties. He went a step further than a previous ruling against the law, declaring the entire thing unconstitutional if the insurance requirement does not hold up.
Attorneys for the administration had argued that the states did not have standing to challenge the law and that the case should be dismissed.
Justice Department spokeswoman Tracy Schmaler said Monday the department strongly disagrees with Vinson's ruling and intends to appeal.
"There is clear and well-established legal precedent that Congress acted within its constitutional authority in passing this law and we are confident that we will ultimately prevail on appeal," she said in a statement.
The final step will almost certainly be the U.S. Supreme Court. Two other federal judges have already upheld the law and a federal judge in Virginia ruled the insurance mandate unconstitutional but stopped short of voiding the entire thing.
At issue was whether the government is reaching beyond its constitutional power to regulate interstate commerce by requiring citizens to purchase health insurance or face tax penalties.
Vinson said it is, writing in his 78-page ruling that if the government can require people to buy health insurance, it could also regulate food the same way.
"Or, as discussed during oral argument, Congress could require that people buy and consume broccoli at regular intervals," he wrote, "Not only because the required purchases will positively impact interstate commerce, but also because people who eat healthier tend to be healthier, and are thus more productive and put less of a strain on the health care system."
Obama administration attorneys had argued that health care is part of the interstate commerce system. They said the government can levy a tax penalty on Americans who decide not to purchase health insurance because all Americans are consumers of medical care.
But attorneys for the states said the administration was essentially coercing the states into participating in the overhaul by holding billions of Medicaid dollars hostage. The states also said the federal government is violating the Constitution by forcing a mandate on the states without providing money to pay for it.
Opponents of the health overhaul praised the decision Monday afternoon. House Speaker John Boehner said it shows Senate Democrats should follow a House vote to repeal the law.
"Today's decision affirms the view, held by most of the states and a majority of the American people, that the federal government should not be in the business of forcing you to buy health insurance and punishing you if you don't," he said in a statement.
Democrats just as quickly slammed the decision.
"This lawsuit is nothing more than an attempt by those who want to raise taxes on small businesses, increase prescription prices for seniors and allow insurance companies to once again deny sick children medical care," Senate Majority Leader Harry Reid, D-Nev., said in a prepared statement.
Former Florida Republican Attorney General Bill McCollum filed the lawsuit just minutes after President Barack Obama signed the 10-year, $938 billion health care bill into law in March. He chose a court in Pensacola, one of Florida's most conservative cities. The nation's most influential small business lobby, the National Federation of Independent Business, also joined.
Officials in the states that sued lauded Vinson's decision. Almost all of them have Republican governors, attorneys general or both.
"In making his ruling, the judge has confirmed what many of us knew from the start; ObamaCare is an unprecedented and unconstitutional infringement on the liberty of the American people," Florida GOP Gov. Rick Scott said in a statement.
Other states that joined the suit are: Alabama, Alaska, Arizona, Colorado, Georgia, Indiana, Idaho, Iowa, Kansas, Louisiana, Maine, Michigan, Mississippi, Nebraska, Nevada, North Dakota, Ohio, Pennsylvania, South Carolina, South Dakota, Texas, Utah, Washington, Wisconsin and Wyoming.
Associated Press Writer Curt Anderson in Miami contributed to this report.
Thursday, January 6, 2011
My dad, bless his heart, got two pieces of plexiglass and glued them together to put a cat door in so they could have an exit out my bedroom window. I didn't want to use a piece of wood and block my whole window.
He also cut a hole in my bedroom door for me so I could put one in so I didn't have to play doorman for my cats... now I can sleep with my door closed.